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Topic: Provide feedback/advice about our site and campaigns?!

Forum: Comments, Suggestions, Feature Requests — Request new or improved features, report bugs, & view upcoming changes.

Posted on: Nov 14, 2017 11:00AM

Moderators wrote:

Hi All,

We thought we would post this thread as we try to encourage more conversation with our amazing community into changes we make to our site, funding campaigns, and other possible areas where we could benefit from your insights.

Please add your name here if you would be interested in getting contacted via PM to help on specific asks. In general we find 1:1/small group intimate user-testing much more beneficial rather than simply posting on the site in a forum.

We have a very large, amazing and talented community, and we want to tap into as many people's insights as possible. With great appreciation and admiraton! The Mods and BCO Team

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Posts 241 - 252 (252 total)

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Apr 8, 2018 08:41AM NotBrokenJustBent wrote:

I am a privacy freak and not savy especially when it comes to the internet world. I have had my identity stolen, my credit card number stolen on two occasions, my healthcare provider was hacked, and my yahoo email account was breached. My ex has gone thru unspeakable measures to stalk and gain information about me and to date I have only told two trusted friends and my immediate family about my BC. Now with the latest on FB I am concerned about privacy issues. Unfortunately my email address is my full name. I would sure hate the whole world to know about my BC and treatment. Am I being paranoid?

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Apr 11, 2018 07:37AM Moderators wrote:

After six consecutive years of receiving a four star rating from Charity Navigator, we have received a three star rating in their most recent release. The calculation of the ratings score is complex and encompasses both financial and governance factors. The change from four to three stars this year is primarily due to our lack of budget growth in both revenue and expenses. Breastcancer.org consistently receives strong governance scores.

We are pleased to report that we continue to allocate approximately 80% of our total expenses to programs, which Charity Navigator also considers to be an important measure. 7 out of 10 charities evaluated by Charity Navigator spend 75% of more on programs.

While it is always our goal to receive four stars and we are working diligently to regain that, Charity Navigator defines a three star rating as: "Good: Exceeds or meets industry standards and performs as well as or better than most charities in its Cause."
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Apr 15, 2018 10:41AM - edited Apr 15, 2018 03:44PM by M0mmyof2

This place and the people here became a lifeline for me when I became a member here. I began to feel as if I wasn’t alone anymore and felt more like I could deal with my fight against this disease. So, I just wanted to say that I agree the medical content should update, but instead of using medical terminology, it should be presented to the members in an easy to understand manner. It is bad enough that doctors use the medical terminology and in my experience, often do not explain it where I can understand it, so I have to go looking it up to try and get a better understanding of what they were trying to tell me.

I hope the moderators understand that for people like myself, I feel at times that when I hear or read about some new study about cancer, the people doing the research do not take into consideration that the people who are impacted by this disease are not all the same and therefore the research feels as if it has become biased and lumps everyone together to achieve their desired results. That kind of thinking can often lead to unintended issues down the line. Just because something may work for one person doesn't mean it will work for others. This is what I am beginning to feels is going on with these “proposed" changes.

Overall, this place is fine the way it is, but what I think most of the members are trying to convey is that it feels as if we are being not listened to when we express our opinions about the “proposed" changes.

If you value your freedom, thank a servicemember both serving and retired!
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Apr 15, 2018 12:37PM - edited Apr 15, 2018 12:38PM by Moderators

Thanks MOmmyof2 for your feedback!

You bring up some important points which are totally reasonable and we will certainly bring your suggestions to the team.

We value our members so much and we hope that you guys know that, so please do continue to post here if you have proposals as to how the site may be improved.

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Apr 15, 2018 01:30PM NotBrokenJustBent wrote:

No proposals to offer but praise to express my gratitude. This site and the amazing people saved my life in the early time when I was completely alone. Today it is still a source of continued updates on research and advancement, and a place to see what others are doing at this part of my journey. I try to give back to the newcomers but lately I am slacking. It brings back difficult times and I am at a crossroad where I am trying to move forward and not back. I give when I am able, though but no longer the mission it once was. I have formed a close alliance with several beautiful women and suspect they will be lifelong friends. I am forever indebted to BCO. Keep up the good work.

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Apr 19, 2018 07:59PM kathindc wrote:

Mods, do we really need four ads for the same drug per page on the Main Site of BCO? It seems a bit excessive, if you ask me. Plus, I would think it could be a turn off for newbies being bombarded in this way, IMHO.

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Apr 20, 2018 04:28AM Moderators wrote:

Hi kathindc! We will take a look and discuss it with the corresponding team. Thank you for your feedback.

The Mods

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Apr 20, 2018 01:57PM Moderators wrote:

kathindc, yes indeed unfortunately it sometimes does happen. The way the banners are done, they run randomly and we are hoping to end this but for now that is what the system does. We apologize, and agree.

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Aug 31, 2018 05:40AM maryna8 wrote:

Dear Moderators,

I first want to thank you in general for this very excellent site, I have made friends here and found so much support.

I also want to thank you for the very excellent link on your home page, the link to the article on peripheral neuropathy, in particular Chemo-induced peripheral neuropathy. I have been suffering from motor, sensory and autonomic CIPN since 2014 and have had no real clear explanation on the whole thing from any doctor. I have wondered why my CIPN is different from other people that I know. Now I know the whys and wherefores, and perhaps I can explain why I am so much weaker than I was before. Thanks again,

Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/19/2014 Mastectomy: Right Chemotherapy 3/17/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 31, 2018 06:42AM Moderators wrote:

Dear maryna8,

Thank you for the thoughtful feedback. We are so glad that you have found the support of the community and the information provided to be helpful to you.

The Mods

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Sep 27, 2018 04:25PM WC3 wrote:

Hello:

I noticed that the "active topics" section does not display all topics that have had recent activity and there is no way to easily see all of the new topics. It would be nice if there were.

Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)
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Sep 28, 2018 12:36AM - edited Sep 28, 2018 12:39AM by Moderators

Hello, WC3!

Active Topics are topics that have had posts submitted to them within the last 24 hours (this would be the maximum recent activity we have). You need to navigate manually to the last page to find the last post.

Hope this helps!

The Mods


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